26: Sharing the Journey

26: Sharing the Journey

From Chicken Soup for the Soul: Living with Alzheimer's & Other Dementias

Sharing the Journey

Friendship is a sheltering tree.

~Samuel Taylor Coleridge

“This is such a hard journey,” I thought, as I looked around the circle of caregivers gathered for our monthly support group. “What if I didn’t have these friends to help me along the way?”

I exchanged brief smiles with the two women and one man who in the past year and a half had become three of my closest friends. One woman’s mother had Alzheimer’s. The other woman and the man cared for spouses with Alzheimer’s like I did. As my husband Ray’s confusion and anxiety increased, the road sometimes got so bumpy I felt I couldn’t navigate it without these people.

When I first met Erika in a six-week Early Memory Loss Series offered by the Alzheimer’s Association, I was immediately drawn to her. I noted the way she gently touched her mother on the shoulder and eased her into a chair, then sat beside her and took her hand. She was soft-spoken, with a broad smile for everyone and infectious enthusiasm for every topic that came up.

As the series progressed, I listened to Erika’s excellent questions. They stimulated my own thinking. I’d read that caregivers often experience a sluggish mind because of the stress of the job, and I was no exception. I welcomed the intellectual stimulation she offered along with her example of kindness.

Erika and her mother began coming to our house for coffee before an art class at the Alzheimer’s Association. One morning she started talking about her work in the early childhood program at a community college near her home, and I jumped up to retrieve a copy of a book on parenting styles I had written two decades earlier. She held the book to her chest, her eyes shining.

“I love these theories,” she said the next week as we sipped our coffee. “Come speak to my class at the college.”

I shook my head. “I can’t count on my brain to work.”

“You’ll be fine,” she insisted.

Reluctantly, I agreed. As she introduced me to her class, I wondered if I could sort out and clearly explain ideas as I once had in workshops I taught. But when I began to speak, the ideas flowed.

“Thank you,” I told her afterward, “for showing me I can still think.”

I also met Marilyn and her husband in the Early Memory Loss Series. A lovely, silver-haired woman with sparkling blue eyes, Marilyn had a serene presence that literally awed me. I was anything but serene. “Don’t you want to drive off a cliff sometimes?” I asked her one afternoon after class.

“Of course,” she said with her tranquil smile. “Or push my husband off.”

I laughed. Even Marilyn felt as frustrated as I did.

“When I feel like that, I focus on all the things we can still do together,” she continued. “A hug. Dinner out. Going to a movie even if he can’t follow all of it.”

I thought of how I sometimes snapped at Ray when he asked the same question for the third time in five minutes, even though I knew he couldn’t help it. I didn’t want to be like that. I needed to be around Marilyn more.

We took a series of classes together, Powerful Tools for Caregivers, and afterward I plied her with questions about how she managed such a calm, peaceful demeanor.

She said it was her experience. She had been on this Alzheimer’s journey three years longer than I had, and had once cared for a sister with special needs. She also went to Qigong several times a week, a Chinese practice of aligning breath, movement, and awareness, and she regularly meditated.

Inspired to build more companionship into my days with Ray, I found that if I recorded television shows we both enjoyed, I could then pause them to answer his frequent questions, and rewind if I missed something while he talked. I hadn’t watched much TV for years, but found we could enjoy many tension-free evenings that way.

When summer came I went to several Qigong classes that Marilyn helped teach, and I started meditating every evening. I still got overextended and anxious as Ray and I struggled with his capabilities, but I slowly developed more patience.

I met Milt at our adult community center’s support group for caregivers of those with Alzheimer’s. Every month I listened to this gracious man talk about his love for his wife and his unwavering commitment to care for her. Like Erika and Marilyn, he exuded an amazing warmth and kindness. Milt’s wife and Ray shared some of the same aspects of Alzheimer’s, but Milt sounded a lot more at peace with caregiving than I was.

Ray and I enjoyed both Milt and his wife, and the four of us began to meet regularly for coffee or lunch. We talked about the principle of “a day at a time” — how we needed to concentrate on the task at hand. While generally planning for the future, if we looked down the road too often, we overwhelmed ourselves with “what ifs,” and couldn’t do as good a job of solving current problems.

We talked of making sure we practiced gratitude for the things we had instead of stewing over the things that were no longer ours. And we grieved together. Our spouses couldn’t do many of the things they had once enjoyed; the disease brought personality as well as physical changes, which affected our relationships.

I watched Milt take his wife’s hand, or put an arm around her, and there was such tenderness in his actions that I wondered what the secret was behind his patience, understanding, and acceptance. Eventually I learned a deep faith in God sustained him. I had grown up in a religious family and believed in God and the power of prayer, but not with Milt’s level of devotion. He was completely grounded in his love of the Lord.

Ray and I went to church several times with Milt and his wife, and afterward talked about the service over lunch. I had a hundred questions and he answered them, but never pushed his beliefs on me. Still, little by little, his influence seeped under my skin. I had experienced periods in my life when I felt close to God and turned to him often, but I wasn’t in one of those times when Ray received his diagnosis. Slowly, following Milt’s example, I found my way onto a more spiritual path. When my mood was grim, my patience short, I prayed for a quiet mind and peaceful heart, and was calmed and comforted.

Milt was speaking to the group now about how hard it was to watch his wife’s decline. Erika and Marilyn nodded agreement. Who but these friends could truly understand what it is like to lose a loved one to this horrible disease? I took a deep breath. I could make this Alzheimer’s journey, I thought to myself, because I had the example and support of these wonderful friends.

~Samantha Ducloux Waltz

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